disability – Page 2 – Shannon E. Williams

disability, health, Learning, long covid, Reading, Writing

Chronic Illness Storytime: Sick Lit Memoirs

January 4, 2024January 5, 2024 smirkpretty

The Authors. Top L-R: Lunden, Mailhot, O’Rourke, Jaouad; Bottom L-R: Foo, Ramey, Henley, Chong

To become chronically ill is not only to have a disease that you have to manage, but to have a new story about yourself, a story that many people refuse to hear—because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need. My own illness story has no destination.
– Meghan O’Rourke, The Invisible Kingdom

Imagine falling into a well, tumbling deeper until you crash down into the ghostly ballroom of a towering manor. You come to in the middle of what appears to be a murder mystery party you definitely did not RSVP to.

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body, Brain, Career, disability, Home, Living in the Moment, long covid

5 Answers to 5 Questions You Didn’t Ask

December 31, 2023January 1, 2024 smirkpretty

This last night of 2023 also happens to be my last evening off before returning to work. Three months of medical leave has been the best gift of the year. Because “going out” is no more than a fading memory from a distant land, I’m staying in tonight to answer five questions you haven’t asked yet (but maybe were going to) about Life with the Mystery Sick.

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activism, body, disability, health, long covid

Chronic Illness Storytime: Unrest

November 15, 2023January 1, 2024 smirkpretty

Movie poster for the film Unrest. It shows a woman lying on a white bed with brain monitor cords attached to her head. The poster has movie information at the top, including icons some of the awards that it won.

You have to be able to hold two things in your head. This illness destroyed my life. But what it showed me, I could never give that back.
Jennifer Brea, Unrest

Please watch this film. It’s the story you didn’t know you needed. If you want to understand what Long COVID is about, all the articles and essays in the world won’t get you as far as Unrest. No matter that it came out in 2017 before the pandemic. The chronic illnesses that can ravage a body (and a population) after an infection have been around as long as people have.

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body, Brain, disability, health, Learning, long covid

Enough Already: Notes on Sensory Overwhelm (part 2)

November 8, 2023November 8, 2023 smirkpretty

Why is it not enough to just be a gas station? Why does it also insist on being an entertainment platform, an advertising space, and a point of sale? All I’m asking from the Shell station is a fill-up on my little Prius. But as I stand there, pump in hand, the doors to the convenience store scream with images of Lottery jackpot numbers, cryptocurrency, Marlboros, and every flavor of beverage. Then, as soon as I’ve activated the pump, an upbeat voice starts speaking to me. About what now? The latest fashions on the red carpet? Yes, right at eye level, an entertainment “news”cast video selling more more more. More products, shows, celebrities, a car wash, and an upgrade to premium gas.

Enough already!

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body, disability, health, Learning, long covid

Maintenance Required: Notes on a Crash

October 9, 2023October 30, 2023 smirkpretty

Photograph of an old rusted out car sitting on a dirt driveway near a fence and some run-down houses. A cactus is growing next to the car. — Photo by Angelique Downing from Burst

In a Disney princess bag behind the passenger seat lives the crash kit. Here is what you’ll find inside:

One basic medium pillow
One fuzzy neck pillow
One blackout eye mask
One pair of Loop earplugs
One packet of electrolyte powder

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body, disability, long covid

Slow and Steady: Notes on PEM

September 24, 2023March 11, 2025 smirkpretty

Shannon standing on the lookout of a mountain with a view of the sky and coast of Kaua'i. She has a goofy smile and has her hands turned up — A thousand lives ago on Nounou Mountain Trail, or Sleeping Giant (Kaua’i, Hawai’i, 2022)

Going through photos of the last trip before my life changed, I see her. That me is there, radiating all the pain and exhilaration of the little mountain she climbed with her partner on their first day in Kaua’i.

I love that girl. She was hurting bad from a bum hip that would get replaced in a year, but she powered through it, sun-happy and heart-strong.

She started vanishing just a few short months later, replaced by a body-snatching invasion of Long COVID symptoms.

The worst of those symptoms? Post-Exertional Malaise.

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body, Brain, disability, long covid, Take Action

Calling for a Skycap: Notes on Fatigue

September 5, 2023October 30, 2023 smirkpretty

Meme of a person smiling and reaching for a balloon that says "COVID is mild" just before the person is grabbed by a figure that says "Long COVID"

While we still have much to learn about long COVID, a growing body of research paints a worrisome picture, and more needs to be done to help understand, prevent and treat long COVID.
– Sens. Tim Kaine (D-VA), Todd Young (R-IN), and former Sen. Jim Inhofe (R-OK) in The Hill, 8/31/23

Imagine this.

You board that long haul flight woozy from too many hours of debauchery. Your center row seat wedges you between a fussy lap baby and a linebacker whose shoulders take up half your headrest. Plus there is the dude behind you who spends the whole flight playing a first-person shooter game balanced on the tray table at your back.

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body, disability, Dogs, Fitness, health, long covid

COVID-versary

July 13, 2023July 13, 2023 smirkpretty

Me: I’ve been thinking a lot about where we were this week last year

Co-worker: Were we in WA? Where your whole life changed and you were so sick??

Me: That’s the place! I was about to be escorted off campus. But it was a great first two days!

It’s the one-year anniversary of my first (and so far, only) COVID infection and I’m spending it much the same way as I spent the week in 2022. Dizzy, queasy, exhausted, and trusting that work can get on without me.

And bored. So very bored.

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body, community, disability, long covid

See Here: Notes on Long COVID

June 28, 2023October 30, 2023 smirkpretty

Smoke and hand obscure face inside black hoodie.

46,000 of us on a Reddit sub. 60,000 on a private Facebook group. Tens (or even hundreds) of thousands still on Twitter despite the fallout from the buyout. Discord groups. Regional discussion boards. And circles absorbing circles as sub-types make homes in community with those suffering from ME/CFS, MCAS, and other illnesses.

These are just the collected few. We are always dealing with small clusters. Only 10-ish percent who get the virus will end up with post-viral syndrome. A percentage of those show symptoms severe enough, or enduring enough, to register among a baffled medical establishment as more than anxiety, aging, or “all your tests are normal, try meditation and drinking more water.”

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body, Change, disability, Fitness, Living in the Moment

Sticker Shock

January 8, 2023 smirkpretty

“Take Nothing for Granted”

Says the sticker inside locker 213.

It’s a sizeable sticker. Bigger than “Deposit Quarter, Take Key.” More insistent than “Be responsible! Always lock your locker!” It hangs there at a cocky angle. Shabby, smug, sure of itself. Shredded at the edges, about five and a half feet off the ground (eye level for some of us). The size just shy of a bumper sticker. An iconoclast. A poseur. Trying to be something different. To proselytize from unlikely, and unavoidable, public soap boxes. Not truck bumpers, no. Instead, utility poles. Bathroom stalls. Park benches. Locker rooms.

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